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The impact of deaf-blindness and sensory deficits on individuals with genetic syndromes and strategies to aid families in obtaining appropriate services

Presented by a team led by Meg Hefner at the 2017 National Society of Genetic Counselors annual meeting in Columbus, OH September 14, 2017

Genetic counselors are familiar with genetic disorders involving sensory deficits, including those that cause deaf-blindness. An individual is considered to have deaf-blindness when the combination of hearing and vision loss causes such severe communication and other developmental and educational needs that the person requires significant and unique adaptations to their educational programs.  Familiar examples of genetic syndromes with deaf-blindness include CHARGE syndrome and Usher syndrome, though there are many others. Genetic counselor training does not typically include education on the complex effects of sensory deficits on childhood development. This interactive workshop will provide genetic counselors with education in this complex area in order to better equip them with strategies to assist their patients and families.  Other presenters include Emily Fassi (genetic counselor), Susan Wiley (developmental pediatrician), Leanne Parnell (OH DB Project) and three parents of children with CHARGE.